Home
Current Issue
Past Issues
Support
About IJME
Jan-Mar2002-10(1)
REPRINT
Whose body is it
anyway?
What doctors should do when
patients make bad decisions
Atul
Gawande
Joseph Lazaroff's cancer had spread throughout his
body. Eight months earlier, he had seen his doctor about a backache. A scan
revealed tumours in Lazaroff's liver, bowel, and up and down his spine. A biopsy
showed an untreatable cancer. Lazaroff went on around-the-clock morphine to
control his pain. … his legs had become weak and he became incontinent. A
scan showed a metastasis compressing his thoracic spinal cord. Radiation had no
effect. Spinal surgery offered a last-ditch chance of restoring some strength to
his legs and sphincters. The risks, however, were severe and his chance of
surviving the procedure and getting back home was slim. The alternative was to
do nothing. He'd go home with hospice care, which would keep him comfortable and
help him maintain a measure of control over his life. It was his best chance of
dying peacefully surrounded by his loved ones. The decision was
Lazaroff's.
Only a decade ago, doctors made the decisions;
patients did what they were told. People were put on machines, given drugs, and
subjected to operations they would not have chosen. And they missed out on
treatments that they might have preferred. Then in 1984 a book, The Silent
World of Doctor and Patient, by a Yale doctor and ethicist named Jay Katz, dealt
a devastating critique of traditional medical decision-making. Katz argued that
medical decisions could and should be made by the patients involved. By the
early '90s, we were taught to see patients as autonomous decision-makers.
In practice, patients make bad decisions too. But
when you see your patients making a grave mistake, should you simply do what the
patients' want? The current medical orthodoxy says yes. After all, whose body is
it, anyway?
Lazaroff wanted surgery. The oncologist was dubious
about the choice, but she called in a neurosurgeon who warned them about the
risks. But Lazaroff wasn't to be dissuaded. Outside the room, David, his son,
told me that his mother had spent a long time in intensive care on a ventilator
before dying of emphysema, and since then his father had often said that he did
not want anything like that to happen to him. But now he was adamant about doing
'everything'. Lazaroff had his surgery the next day. The operation was a
technical success. Lazaroff's lungs wouldn't recover however, and we struggled
to get him off the ventilator. It became apparent that our efforts were futile.
It was exactly the way Lazaroff hadn't wanted to die - strapped down and
sedated, tubes in every natural orifice and in several new ones, and on a
ventilator.
Lazaroff chose badly because his choice ran against
his deepest interests as he conceived them. It was clear that he wanted to live.
He would take any risk - even death - to live. But life was not what we had to
offer. We could offer only a chance of preserving minimal lower-body function at
cost of severe violence to him and extreme odds of a miserable death. But he did
not hear us. Couldn't it have been a mistake, then, even to have told him about
the surgical option? We are exquisitely attuned to the requirements of patient
autonomy. But there are still times when a doctor has to steer patients to do
what's right for themselves.
This is a controversial suggestion. People are
rightly suspicious of those claiming to know better than they do what's best for
them. But a good physician cannot simply stand aside when patients make bad or
self-defeating decisions.
Suppose you are a doctor seeing a female patient in
her 40s. She had a mammogram before seeing you, and now you review the
radiologist's report, which reads, "There is a faint group of punctate clustered
calcifications. Biopsy may be considered to exclude the possibility of
malignancy." You suggest a biopsy. Three times in the past five years, her
annual mammogram has revealed an area of suspicious calcifications. Three times
a surgeon has taken her to the operating room and removed the tissue in
question. And three times under the pathologist's microscope, it has proved to
be benign. "I'm not getting another goddam biopsy," she says, and she stands up
to get dressed. Do you let her go? It's not an unreasonable thing to do. She's
an adult, after all. Still, these calcifications are not equivocal findings.
They often do indicate cancer. Now people have to be permitted to make their own
mistakes. But when the stakes are high, and the bad choice may be irreversible,
doctors are reluctant to sit back. You could tell her she's making a big
mistake. And in all likelihood you'll lose her. The aim isn't to show her how
wrong she is. The aim is to win her over. Notice what good doctors do. They sit
her down. And when you sit close by, on the same level as your patients, you're
no longer the rushed, bossy doctor with no time for them; patients feel less
imposed upon and more inclined to think you are both on the same side of the
issue. Oddly enough, nine times out of ten this approach works. People feel as
if they've been heard, and have had an opportunity to vent. At this point, they
finally begin to ask questions, voice doubts, even work through the logic
themselves. And they come around.
But it is misleading to view all this simply as the
art of doctorly manipulation: when you see patients cede authority to the
doctor, something else may be going on. The new orthodoxy about patient autonomy
has a hard time acknowledging an awkward truth: patients frequently don't want
the freedom that we have given them. That is, they are glad to have their
autonomy respected, but the exercise of that autonomy means being able to
relinquish it. It turns out that patients commonly prefer to have others make
their medical decisions. One study found that although sixty-four percent of the
general public thought they'd want to select their own treatment if they develop
cancer, only 12 percent of newly diagnosed cancer patients actually did want to
do so. Carl Schneider, a professor of law and medicine at the University of
Michigan, recently published a book called The Practice of Autonomy in which he
sorted through a welter of studies on medical decision-making. He found that ill
patients were often in a poor position to make good choices. Schneider found
that physicians, being less emotionally engaged, are able to reason through the
uncertainties without the distortions of fear and attachment. They work in a
scientific culture that disciplines the way they make decisions. They have the
benefit of 'group rationality' - norms based on scholarly literature and refined
practice and the relevant experience.
Just as there is an art to being a doctor, there is
an art to being a patient. You must choose wisely when to submit and when to
assert yourself. Even when patients decide not to decide, they should still
question their physicians and insist on explanations. The doctor should not make
all these decisions and neither should the patient. Something must be worked out
between them. Where many ethicists go wrong is in promoting patient autonomy as
a kind of ultimate value in medicine rather than recognizing it as one value
among others. Schneider found that what patients want most from doctors isn't
autonomy per se; it's competence and kindness. Now, kindness will often be
involved in respecting patients' autonomy, assuring that they have control over
vital decisions. But it may also mean taking on burdensome decisions when
patients don't want them, or guiding patients in the right direction when they
do. Many ethicists find this disturbing, and medicine will continue to struggle
with how patients and doctors ought to make decisions. But, as the field grows
ever more complex and technological, the real task isn't to banish paternalism;
the real task is to preserve kindness.
Mr. Howe was in his late 30s, in the hospital
following an operation for a badly infected gallbladder. Three days after his
surgery, he spiked a high fever and become short of breath. I found him sweating
profusely, he had an oxygen mask on, his heart was racing and his blood pressure
was much too low. I drew blood for tests and cultures, and went into the hall
and paged S., one of the chief residents, for help. S. came right over and went
over to him, put a hand on his shoulder, and asked how he was doing. She
explained the situation: the sepsis, the likely pneumonia, and the probability
that he would get worse before he got better. The antibiotics would fix the
problem, but not instantly, she said, and he was tiring out quickly. To get him
through it, she would need to place him on a breathing machine. "No," he gasped
and sat straight up. "Don't... put me... on a... machine." It would not be for
long, she said. Maybe a couple of days. We'd give him sedatives so he'd be as
comfortable as possible the whole time. And - she wanted to be sure he
understood - without the ventilator he would die. He shook his head. "No...
machine!" He was, we believed, making a bad decision. With antibiotics and some
high-tech support, we had every reason to believe he'd recover fully. Could we
be certain we were right? No, but if we were right, could we really just let him
die? S, looked over at Howe's wife, who was stricken with fear and, in an effort
to enlist her in the cause, asked what she thought her husband should do. She
burst into tears and left the room. Soon Howe did tire out and he gradually fell
into unconsciousness. That was when S. went into action. She slipped a breathing
tube into his trachea. We wheeled Howe to the intensive care unit. Over the next
twenty-four hours, his lungs improved markedly. He woke up and opened his eyes,
the breathing tube sticking out of his mouth. "I'm going to take this tube out
of your mouth now, OK?" I said. Then I pulled it out, and he coughed violently a
few times. "You had a pneumonia," I told him, "but you're doing fine now." He
swallowed hard, wincing from the soreness. Then he looked at me, and, in a horse
but steady voice, he said, "Thank you."
Excerpted by Meenal and Bashir
Mamdanifrom'Whose body is it, anyway?' by Atul Gawande, The
New Yorker, October 4, 1999 pp 84-91.